The Existential Slap & Where’s Will?

Time for update – people asking. Warning – it’s a pretty dark and stormy night. But I am OK now & making gains.

My silence almost killed me.

Things just kept getting worse despite a clear brain. Thought I was slipping into oblivion from “terminal toxicity.” I felt miserable and guilty. By early November, my “Will” disappeared somewhere into the “Upside-Down.”  I was alone and terrified. I hid this from almost everyone. I told Superman and my GP that I wanted to quit 49% of the time in October. Then it was 80%. I wasn’t depressed. This was something scarier. Then I saw the article and knew what it was… https://www.theatlantic.com/health/archive/2017/11/the-existential-slap/544790/

Many of my peers have written about this experience repeatedly. They live with more pain, suffering and grief than anyone. Sometimes you must let the darkness envelop you. You can’t force it away with distraction, affirmations, positive thinking, meditation, or pleasure.  And certainly not Gerson. “Pain deserves to be felt (John Green).”  It hurts immeasurably. Then your peers and mentors die. And this isn’t the worst it will get.  I’m dying (yes, we all are). Not imminently. Only 2% of us with MBC get to die of old age. That’s OK though. It’s natural, not taboo. I’ve been in denial for 6.5 years. I felt like an outlier but now almost 60% of Her2 MBC are alive at 5 years. I don’t wish to sanctimoniously claim it’s “not me.”  Rather than “why me”, “why not me?” It’s better for me to expect the worst and try to appreciate the good – a Stoic philosophy. Please respect this. 

“It is in no man’s power to have whatever he wants; but he has it in his power not to wish for what he hasn’t got and cheerfully make the most of things that do come his way. (Seneca)”

July was a nasty mess of shit. Literally. About a week in hospital and then months of gestating alien shit quintuplets up to 7 days a week. Not painful but very uncomfortable –  misery score 9/10. Trips to ER and hospital until mid Sept. Also ringing in the ears 24/7; postural hypotension – vision goes black; rapid heart rate - standing in kitchen or shower 140 bpm, sitting 100, & can’t sleep; pounding headaches if up too long; aching hands & feet - tendency to burn/scrape myself because I can’t feel them; SOB, effortful breathing when the belly squishes my lungs, burning lungs; brain fog – can’t remember some things in conversation if upright yet can write excellent academia in recline. I ate from a blender for 5 months. I still use a walker and power wheelchair for anything outside of the house. I was aided by home support for showers. By October I could only be vertical for 1-2 hours a day. I have 4 bald spots – one of which is 5”.  All stemming from the drug that extended my life...Perjeta. I took a break from Perjeta at the end of August. I was desperate to feel a little better. But as soon as I’d get a glimpse of “OK,” I’d get plunged into misery again. My patience has never been tested like this.  I finally asked Tequila if I could take a break but really, I was asking permission to quit. He was direct and said, “ I hate to hear you’re not better.  Would persist with Herceptin alone for now.” (Hint: Odds are slim to none that I can go off treatment. Suck it up buttercup.) Superman sent me quotes from my favourite book/movie. I had an exquisitely painful night in early November and finally decided that giving up wasn’t an option. 

“I can’t go on. I’ll go on (Samuel Beckett).”

Something changed that dark night. I decided to say F you to my body/mind and force myself to stay up, do stuff, and most importantly, embrace the pain and misery. I realized my family wanted and needed me even if I had to stay in bed full time. My son had a concussion and was struggling with some really big stuff.  

I read a Buddhist guide to chronic illness. (The author was ridiculously privileged and whinged too much but had some great suggestions.) I don’t practice meditation nearly enough but then a formal sitting practice is not for me. I prefer mindful daily living. These ideas have helped:

·         Beauty of the moment: “Think of all the beauty still left around you and be happy. (Ann Frank)”

·         Joy in other’s joy rather than envy (I’m open to a vicarious Bali experience big sister)

·         Tonglen – breathing in the suffering of everyone in my situation (including me) and breathing out peace and well-being 

·         Loving-kindness to self and others

Then one day, I pulled out the Wii Fit and started working on balance and light exercise for a few minutes. I started walking from the car to the grocery store without an aid. (5 min max). I stayed up 4-5 hours at a time. I finished our 2016 taxes. I continued with my masters - 93% in my last course. I participated in patient advisory roles though took a break from hard-core advocacy. My studies and advisory roles kept me going when I couldn’t. I started clearing out all the stuff that you carry around but means nothing to anyone else. I read notes and letters from friends and boyfriends in high school then recycled them. Kept a few insights for my kidlets. The last year made me realize that things could get much worse suddenly and I’d be incapable. I don’t want to leave my loved ones with a bigger mess than I need to. It’s almost became a compulsion – like “nesting” before you have a baby. I look at it as preparing to depart and/or a fresh start.  I’m also trying to rehabilitate my mind and body so that if things get worse, I’ll be able to handle it. I feel like I’m free falling in Her2 cancer-land, risking progression. I’m at 30-40% of my function a year ago and still often struggle with pain, exhaustion, or abdominal distention. Things can change in minutes though pretty sure they are improving, overall.  At least my attitude is.

Many people “showed up” for us during this difficult time. Superman, Tequila, Dr. cdM (collaborative decision maker – a nod to RHSC 503), family, friends, neighbours, and Families Fighting Cancer Sea-to-Sky. My UBC Masters of RHSc friends and instructors were invaluable. Many brought us meals, made donations, or did errands for us.  The dance and hockey community supported us. The high school community was (is) outstanding. So many helped rekindle my fire.  But some people drifted away. I understand everyone has a life. I’m not angry. It happens regardless of illness.  I’ve been self-absorbed.

"At times, our light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame witin us. (Albert Schweitzer)"

Now you know what was going on behind the mask when you told me to think positive, that I looked so good, was so inspiring… I know there are at least 200 000 people with MBC who do, too. I’m not “special.” I might be the 2% but there’s a 98% chance I won’t be AND THAT’S OK.  Like my mentor, Beth Caldwell (rest in peace my feisty friend), I intend to live and die out loud even if people aren’t comfortable with it.  Sorry, not sorry. 

Game on! Bring on the holidays.

We are gathered here today
To get through this thing called LIFE.
Electric word "life"
It means forever and that's a mighty long time
But I'm here to tell you, there's something else
The afterworld.
A world of never-ending happiness
You can always see the sun, day or night.
So when you call up that shrink in Beverly Hills
You know the one, Dr. Everything'll-Be-Alright
Instead of asking him how much of your time is left
Ask him how much of your mind, baby
'Cause in this life
Things are much harder than in the afterworld
In this life, you're on your own
And if de-elevator tries to bring you down
Go crazy

Read more: Prince - Let's Go Crazy Lyrics | MetroLyrics